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Upon Diagnosis; “THANK GOD I was Not a Medical Professional!!!!”

I am not speaking for anyone else here, I am speaking for me. I am so glad that when my daughter was diagnosed in 1992 that I was not (and still am not) a medical professional.

Imagine being trained your entire professional life all of the medical perspectives to everything in the human body. Imagine you have 15 years as a Doc, a nurse, a PA, or any other medical profession and BOOM………diabetes diagnosis.

Your professional mind starts to go a mile-a-minute with everything you know. Bad, good, it does not matter; your training tells you everything that is happening in your child’s body.

No thank you.

Now don’t get me wrong; we spent a huge amount of time handling this disease from the ‘get-go’. We all have. In the middle of EVERYTHING that happened during the early days,weeks, months, after diagnosis–I’m just glad I had to learn it all and diabetes as a professional diagnosis was not in my purview. I think if I knew exactly ‘what it all meant’ to have diabetes from the get-go; I do think I would have gone a little cuckoo. Ignorance, from my point of view, was bliss.

Sometimes not being fully educated from the get-go; ain’t such a bad thing.

What about you? Do you wish you had a lot more knowledge about (not the managing aspect) of what ‘it meant’ when you or child was diagnosed with diabetes?

15 thoughts on “Upon Diagnosis; “THANK GOD I was Not a Medical Professional!!!!””

Hi Tom…I am an RN, BSN by profession…but wife and mom have been my “career” since the birth of my first-born (non-D) 22 years ago. I took care of many patients who had diabetes, and taught many who were newly diagnosed (but they were typically type 2). I worked on med-surg units, then in the ICU and ER for a total of 8 years prior to leaving the profession. I also had a cousin with type 1 and a sister-in-law with type 1. So you could say I was pretty well versed when it came to diabetes.

When Nathan was diagnosed at the age of 4, I quickly found out just how much I “knew” about type 1 diabetes. Now I was an experienced nurse, trained in one of the top nursing schools in the country, working at top notch hospitals, and I was also a VERY GOOD nurse, if I do say so myself. What I learned with the addition of type 1 D into my family was that I didn’t know squat about type 1 diabetes. I knew how to do a finger stick and give a shot, yes. That part, which is often so scary to new type 3’s (parents of type 1’s), was nothing to me as far as the mechanics go. But sticking my precious baby’s finger brought me to tears just like anyone else. I realized that I’d NEVER understood the ins and outs and the reality of how HARD type 1 is, and just keeping these terrific kids alive day in and day out, especially in the first months after the honeymoon phase ends was COMPLETELY new to me.

I knew about the long term risks and possibilities, yes. And I have to say that, in those early months of learning how to live with the D Monster, the long term risks were the last thing on my mind. Our CDE RN’s know so much about this, and I don’t include them in my assessment…but the “average” nurse in the pedi’s office, the ER, and the medical units of the hospital is taught about type 2, NOT about the realities of type 1, and they apply type 2 thinking to type 1. In my subsequent visits to the hospital with Nathan (which, blessedly, have been limited), I’ve found this assessment to be spot on. Even the ER doctors don’t seem to have the best grasp of type 1 in a kid.

So, I don’t know that I knew all that much more about type 1 in my kid than you did, other than not having a learning curve about drawing up insulin and injecting it. Most folks know (and ignorantly tell us when they hear our kid has D) about amputations and kidney failure, so that’s not a medical professional thing. See Tom, you weren’t missing much! Thanks for being a voice for the D community, and for all that you do for your kids, and ours 🙂

What a FABULOUS view; ‘….from the trenches…’ Thank you for sharing Lori. I found it amazing that being in our shoes or in yours; really did not seem to be so different, as you stated. I read your response and I was like, “REALLY!!!!”
I LOVE TO LEARN and you gave all of us a wonderful education today; that you so much for adding your wonderful perspective.
TRULY appreciated.

My story is a little different. I grew up with a Mom who is Type 1. My daughter was diagnosed at the age of 2. With my Mom we have been through a lot of the bad with diabetes (but she has also not managed her diabetes well, I have learned). She fought for her vision for about 3 years, during my teenage years and I was left raising my little sister who was 2yo during the battle. After 3 years, she was able to keep her vision but the scars on me will never leave. We also battled kidney disease and all the bottoming out of sugars and seizures that went with it and finally a kidney transplant that was very successful (but in all honesty, I never want to have my daughter go through one). With all the bad I experienced with my Mom, and the knowledge that I have about type 1. I think I strive harder to keep my daughter’s sugars where they should be. I refuse to let her go through the same things my Mom did. I will say though, having a parent who takes care of themselves is very different than taking care of your own child with type 1.

Being married to a Physician who dx’d our child was extremely difficult for my husband. I knew something was up with our daughter. She had just gotten over scarlet fever. Few days later..excessive thirst, urination, excessive eating. Getting up in middle of night wanting 4 bowls of cereal. I went in and told my husband that she developed an obsessive eating disorder or something wasn’t right? Of course he tells me “I hate to tell you what I think it is”. So we did the “specimen” that he took to the ER with a close friend, RN. Did the test..positive! He nearly fainted. Now this man is a Brain Surgeon, but seeing that diagnosis of his little girl and then having to tell me was one of the most difficult days of his life! There is a reason that Doctors are not allowed to treat family members…too emotionally involved! We are thankful we caught it early. I sometimes feel guilty for not noticing the signs earlier. Being trained as a medical assistant and having a nephew with type 1. Fast forward 11 years later, it helps having a medical profession in the family. We can write some prescriptions in a bind. Excuse absences from school. I can get answers from him instead of making unnecessary trips to a Dr’s office. But diagnosing your own child…heartbreaking! And recently he recieved the initial diagnosis of her having celiac disease! Not easy, and seeing your child heartbroken all over again.. Devastating. But we are a strong family. We are all in this together!

Fabulous words from a woman in the know…..I cannot tell you how many reached out and agreed that having a medical professional, at times, helped…..butthe pain and anguish that is felt is no different no matter what. At the end of the day….we are all parents.

This is a great post. I am thankful for my knowledge but it has also made me a bit crazy 🙂 Before I became a mom 3 years ago I was a Pediatric Intensive Care nurse. And I saw a lot of Type 1. I would see DKA’s that wouldn’t make it…the real horrors of the disease. So I am scared a lot for my 3 year old. As a stay at home mom and ex PICU nurse I am obviously my son’s primary caregiver. I am the one who manages his diabetes 24/7. I have a wonderful husband but I am the “expert” when it come to T1D. This is good but it also puts a lot of pressure on me. Everyone looks to me to make the right decision in each situation. I think that when both parents are starting out on the same playing field they are equal in their knowledge and understanding of the disease. However, when one already has a vast amount of experience it changes things up quite a bit.
Thanks for this blog. It is really great!

Thank you for your words…..I love your line “Everyone looks to me to make the right decision in each situation……”; I would bet my last dollar that 90% of the moms out there would attest to that same point WITHOUT a medical background…..so you are in good company.
Thanks for chiming in.

As a midwife and ARNP I knew something was wrong when my 7 yo daughter was drinking all the time and urinating all the time. When her pediatrian confirmed my fears I was devastated. I knew about Gestational Diabetes and Type 2 but not much about Type 1. Sure I knew how to do fingersticks and how to give insulin injections but when its your own child its a whole new ball game. The endocrinologist said since we knew the basics and had diagnosed her early we did not need a hospital admit but boy was I scared those first few weeks.
She is 13 now and we have learned a lot together. Luckily she has never needed to be hospitalized but I sure do hate this disease. And honestly there are still times where I am still scared to death.

Hi Tom,
Thanks for this post. I am an ER physician assistant and most of the time I’m afraid to come clean about it. You see, I have felt discriminated against because I am a health care provider. I have practiced for over 15 years. I have diagnosed new onset Type I, treated DKA and the complications of both Type I and Type II diabetes. I diagnosed my daughter at the age of 27 months, now 3 years old. I have been told by multiple endocrinologists that I have helped prolong her honeymoon phase for over 1 year. (I actually would prefer something a little more consistent that a defunct pancreas could offer instead of this horrible roller coster.) Having said that, when I meet other parents of Type I children, and they find out I’m a PA, I have heard multiple times, “wow, you know so much?” or “that’s awesome, it must be easier for you?” The truth is, it’s not easier, it’s not awesome and I’m devastated just like everyone else. I’m embarrassed when I sit in meetings and hear that it took other parents three-five trips to a health care provider to make the diagnosis of Type I diabetes. And I’m petrified. I’m petrified that every mistake that I make today, will affect my little girl later in life and I “should have known better.”

On a positive note, my husband thanks me everyday for my education and experience. He relies on me for all medical decision making and tells me he couldn’t do this without me. I guess we make a good team!

You are not alone…..and in more ways than you think. I have lost count how many times I have talked to parents and they have asked me where I received my medical degree. The gulit; that I have no right for anyone to think that way. I am just a dad. But I know that knowledge is the ultimate equalizer. I am actually the perfect example of the point that anyone can learn what they want to learn and I am ions away from being where I THINK Ishould be.
It’s nice to see a couple where both recognize their strength and their role in caring for diabetes. Thank you fo rsharing your insight.

My husband is an RN. It’s been a year and 5 months since our daughter’s diagnosis and I admit I still (often) defer to him when I have questions. He may have started out knowing more than I did about this disease, but I have quickly caught up. When I start to doubt myself, he works hard to reassure me that I know what I’m doing – even though I’m not the one with a degree in the medical field. We’ve become a good team, and for that I’m very grateful!